Chicago End-Of-Life Care Coalition Hosts Fall Benefit

Nearly 100 medical professionals, storytellers and patient advocates attended the Chicago End-of-Life Care Coalition’s annual fall benefit, an effort that raised funds supporting the organization’s educational programming throughout the Chicago area. The event, “An Afternoon of Stories,” was presented with Stories on Stage, one of the city’s only live, dramatic short story reading series.

Dr. Charles Rhee, an assistant professor of medicine at the University of Chicago’s Center for Geriatrics and Palliative Medicine, said he appreciated the nonprofit organization’s commitment to educating the public about the importance of end of life conversations and advance care planning.

“It’s amazing to see such a gathering of people united for such a cause, and the performances really highlighting the joys and terrors of the end of life,” he said. “I think end of life discussions are taboo in America because of our health care system. We talk so much about cures and extending life as long as possible, and we forget about death. The most natural things in the world are birth and death.”

Rhee said his favorite story of the night was “Lilacs” performed by Brendan Kelly, partly because of its focus on HIV/AIDS and its “dark and powerful” tone. The script sampled fiction from acclaimed author and activist Dr. Abraham Verghese.

Brendan Kelly performing “Lilacs”

Rachael Telleen, project director for POLST Illinois, said she was encouraged by the diversity of the attendees.

“Seeing people of different ages, seeing people with an interest in end of life, having so many supporters is fabulous,” she said. “I hope the CECC helps the POLST form become more common and accepted, especially as people keep aging.”

POLST is more detailed than conventional living wills or advance directives- these medical orders extend patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things. POLST is an updated version of Illinois Department of Health Uniform DNR Advance Directive and is intended only for the terminally ill.

The evening was sponsored by several end of life care organizations, including Midwest CareCenter, Rainbow Hospice and Journeycare.

“I love the fact that people are willing to come and hear stories about death and dying,” said Ronette McCarthy, legal counsel for Elements, the cremation company and a member of the CECC’s board of directors. “I look at the CECC as one of the only collaborative end of life groups in the Chicago area. It consists of physicians, attorneys, chaplains, doctors and social workers.”

Life Matters Media founders Dr. Mary F. Mulcahy and Randi Belisomo are members of the CECC.

Many medical providers, end of life care activists and hospice nurses support Medicare reimbursement for end of life conversations between physicians and patients.

Medicare could soon begin reimbursing doctors if proposed billing codes from the American Medical Association are approved. Almost five years ago, similar proposals were dropped from the Affordable Care Act amid allegations that coverage for end of life conversations would lead to “death panels.”

“Each year, the AMA provides CMS with revisions to the CPT (Current Procedural Terminology) coding system that is used to price thousands of physician services. In a typical year, there are hundreds of codes that are either new, revised or deleted,” according to a CMS statement sent to Life Matters Media.

The Centers for Medicare and Medicaid Services may choose to establish payment and cover the sessions as described by the code; not pay for the specific code, but cover the sessions as part of another code; or deny payment altogether. A decision is expected this fall.

Sessions for some 50 million Americans could be covered by Medicare, and some private insurers have already started reimbursing doctors for time spent helping patients complete advance health care directives. Interest in doctor-patient communication has increased as baby boomers age.

“We think it’s really important to incentivize this kind of care,” Dr. Barbara Levy, chair of the AMA committee that sends codes to CMS, toldThe New York Times. “The idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”

The hope is that doctors will encourage more seriously ill patients to complete advance health care directives and identify “goals of care.” An advance directive may take the form of a living will, power of attorney or the Five Wishes collection. The overall purpose of such forms is to help ensure one’s end of life wishes are carried through in case of illness or incapacity.

“Just as important as the completion of these documents are the discussions that patients have with their physicians and other health care providers, as well as their family members,” said Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, in a statement to Life Matters Media. “Discussing advance care planning before a person finds him or herself in a medical crisis will help ensure the patient is more likely to get the care that he or she wants.”

Research shows patients that discuss their care options when facing a serious or life-limiting illness report a higher quality of life. “Family caregivers also benefit from discussions held between physicians and patients,” Schumacher added.

When health care reform was signed into law in 2010, many Democrats wary of being identified with “death panels” dropped all proposals associated with end of life planning, despite support from many in medicine.

According to Politifact, a Pulitzer Prize-winning fact checker, comparing end of life counseling to “death panels” was 2009′s “Lie of the Year.” Former vice presidential candidate and Alaska governor Sarah Palin was the first to coin the term “death panels” on her Facebook page after the release of an early draft of the bill. Some conservatives charged that vital care would be cut off to the aged and ill if doctors recommended they receive less aggressive treatments.

“Everyone in this field has been working on this for a long time. It’s very much needed, because it helps patients think about what’s important to them, what they consider a ‘good’ quality-of-life,” Long told LMM. “I think most of the controversy goes back to the conflated issue of ‘death panels,’ where some individuals misquoted and misunderstood what was in the proposed law.”

Dr. June M. McKoy, director of geriatric oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, described coverage for end of life counseling as a “double edged sword,” because physicians must be careful not force their medical advice or religious and political beliefs upon patients.

“Doctors do not live in a vacuum,” she told LMM. “Can doctors learn not to be paternalistic? To also be quiet and listen? To be a facilitator?”

McKoy recommends doctors develop a trusting relationship with their patients and bring up end of life-related discussions more than once, because a patient’s wishes can change.

She called the “death panels” controversy “farfetched and ludicrous,” because most medical centers have “layers” to protect patients, and that most doctors work to honor their patients’ wishes.

“Coverage can be a great thing, because it gets the conversation going. Many people don’t get the chance to make their own end of life decisions — somebody else makes it for them. It helps to have decisions in writing,” she added. “It helps families, too. I have seen families torn terribly apart after a parent dies, when siblings stop talking to each other, because they disagree about the parent’s medical care.”

Loretta Downs, a hospice volunteer and end of life care activist, supports coverage for end of life counseling because she fears receiving unwanted treatments in case of incapacity.

“I just turned 65, and Medicare is spending a great deal of money on various medical tests that are triggered by turning 65,” she told LMM. “It would be helpful and practical to include payment for a conversation with my primary care physician about protecting me from unwanted medical treatment if I unexpectedly became hospitalized in critical condition and unable to voice my choices for treatment.”

Medicare could soon begin reimbursing physicians for end of life conversations with patients, almost five years after similar proposals were taken out of the Affordable Care Act.

Bypassing the political process, some private insurers have already started reimbursing doctors for time spent helping patients complete advance health care directives, The New York Timesreports. Interest in doctor-patient communication has risen as the millions of baby boomers age.

Sessions for some 50 million other Americans could be covered by Medicare if recent requests from the American Medical Association, the nation’s largest association of physicians and medical students, are approved. The AMA recently created codes for end of life conversations and submitted them to the Centers for Medicare and Medicaid Services (CMS).

“Each year, the AMA provides CMS with revisions to the CPT (Current Procedural Terminology) coding system that is used to price thousands of physician services. In a typical year, there are hundreds of codes that are either new, revised or deleted,” according to a CMS statement sent to Life Matters Media. “Advanced care planning was among the codes sent to us by the AMA.”

CMS may choose to establish payment and cover the sessions as described by the code; not pay for the specific code, but cover the sessions as part of another code; or deny payment. A decision is expected this fall.

“We think it’s really important to incentivize this kind of care,” Dr. Barbara Levy, chair of the AMA committee that sends codes to CMS, told the Times. “The idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”

The signature of President Obama on the Affordable Care Act. Courtesy WikiMedia Commons and whitehouse.gov

When health care reform was signed into law in 2010, many Democrats wary of being identified with “death panels” dropped all proposals associated with end of life planning, despite support from many medical professionals, caregivers and ethicists.

According to Politifact, a Pulitzer Prize-winning fact checker, comparing end of life counseling to “death panels” was 2009’s “Lie of the Year.” Former vice presidential candidate and Alaska governor Sarah Palin was the first to coin the term “death panels” on her Facebook page after the release of an early draft of the bill. Some conservatives charged that vital care would be cut off to the aged and ill if doctors recommended they receive less aggressive treatments.

Karen N. Long, president of the Chicago End-of-Life Care Coalition, said she believes patients will benefit from one-on-one conversations with doctors about their “goals of care.”

“Everyone in this field has been working on this for a long time. It’s very much needed, because it helps patients think about what’s important to them, what they consider a ‘good’ quality-of-life,” Long told LMM. “I think most of the controversy goes back to the conflated issue of ‘death panels,’ where some individuals misquoted and misunderstood what was in the proposed law.”

An advance health care directive may take the form of a living will, power of attorney or the Five Wishes collection. The overall purpose of such forms is to help ensure that one’s end of life wishes are carried through in case of illness or incapacity.

In collaboration with the Chicago End-of-Life Care Coalition, Life Matters Media will host award-winning journalist and author Katy Butler at Loyola University in Chicago on June 19. Butler will offer reflections on her best-selling memoirKnocking On Heaven’s Door, a personal examination of how medical technology is often used in ways that cause unnecessary suffering at the end of life for millions of Americans.

Butler spoke with LMM about her inspirations and experiences behind the book’s creation.

Are you surprised by the book’s success?

Katy Butler, author of ‘Knocking on Heaven’s Door’

What most surprised me is the positive response from within American medicine, because the book really is a sharp critique of where we have drifted to with end of life practices in our medical system.

I didn’t expect to be invited to give grand rounds, and it has been a really amazing experience. I have also noticed a growing counter-culture in medicine– particularly from the palliative care doctors, hospice providers and primary care physicians– people who really want to see a change.

People know that something is wrong and see the suffering, or they have a family member that goes through this experience and realize that even though they are doctors and nurses, they still can’t navigate the system.

Do you ever receive letters from readers?

Sometimes two or three letters a day. I feel validated, and it makes it clear to me that what I am saying is becoming kind-of mainstream. Many, many letters from people facing an ill-advised late-life operation.

I have also noticed more stories of “blue skying” in letters. That’s when doctors tell you about a treatment’s advantages, and how it could work out really well- but they never talk about risks.

What does “good” end of life care look like to you?

To me, I think the ideal for most people is still the ideal of the Victorian age: you die at home, surrounded by friends and family, with pain controlled and with meaningful interactions with loved ones to help leave them better off.

That is not what we see in the U.S. Instead, one-fifth die in intensive care, and 30 percent cycle though intensive care in the last month of life. That leaves families traumatized.

What I have come to realize since I finished the book is that I do not think of good end of life care as being separate from good medical care for the aging. Instead, good end of life care should be a continuum- a shift from thinking of medicine’s most important role as maximizing longevity or curing people.

What would you say to a doctor who maintains that he or she has the responsibility to prolong life at all costs?

If you only believe in making your patient survive as long as possible, there will be a time when you feel like a failure. Every patient will die. But you can widen the lens and realize that you can always do something to relieve suffering and support the patient’s family.

Are you excited to present in Chicago?

This will be the first time I will be presenting to an end of life coalition, people who are really up on these issues- more so than other medical professionals. I want to devote some time to language. The end of life improvement movement needs a lot of help with language, because a lot of the language of medicine is still full of euphemism.

For example, “goals of care” is a term within medicine to describe the shift from all-out “let’s save their lives” to “let’s minimize suffering.” But to a lay person, what the hell does “goals of care” even mean? The word “care” is completely overused.

Seriously ill patients near the end of life who stop eating and drinking make an ethical and legal decision to hasten death, says Craig Klugman, chair of the department of health sciences at DePaul University in Chicago.

Voluntarily stopping eating and drinking (VSED) is legal in every state for the terminally ill. According to Klugman, seriously ill adults of sound mind should have the freedom to make decisions about their care at the end of life.

“While assisted suicide is only legal in a small number of states, rational suicide is legal everywhere,” Klugman told Life Matters Media. “This is not the same as removing artificial nutrition or a hydration feeding tube; a person stops ingesting food and liquid by mouth.”

Klugman said the process is fairly painless, and after a couple days the patient will cease to feel hunger pains and become drowsy. “We know this from studies of individuals on hunger strikes,” he added. “Choosing not to eat or drink does not mean a person rejects comfort care such as pain control, chewing on ice chips, and moisturizing the lips, skin and other tissues that can be uncomfortable as they dry out.” Patients die of dehydration, not starvation.

Loretta Downs, past president of the Chicago End-of-Life Care Coalition and founder of Chrysalis End-of-Life Inspirations, maintains that stopping eating and drinking is a natural behavior. “Every living thing stops taking in nutrition near the end– animals, plants, people. A person who is dying will often lose their appetite,” she said. “It is an important behavior because the patient still has control.”

Downs urges families of dying patients to remember that better care is often less care. “Loved ones often provide comfort food and drink during life, but at the end patients may become nauseous from the smell of food,” she said.

According to a 2003 study published in the New England Journal of Medicine, researchers determined VSED often results in “good” deaths. According to the survey of more than 300 Oregon hospice nurses, most deaths from voluntary refusal of food and fluids were peaceful, with little suffering. Only 8 percent of patients were thought to have had a poor quality of death. One in eight patients whose outcome was known resumed eating and drinking, most often because of thirst or pressure from family members.

Counselors with Colorado-based Compassion & Choices, an advocacy group working to enhance patient rights at the end of life, facilitate discussions about VSED with willing patients across the country.

“The patient needs to be clear about what he or she wants, and let the family know. The process can be peaceful and comfortable, especially if hospice is on board,” said Dr. Judy Neall, medical director of Compassion & Choices’ end of life consultation program. Neall said about 20 percent of patients Compassion & Choices counsels each year about hastening death are VSED patients.

“What can make patients feel uncomfortable during the process is if family or friends provide some food or water, because then the body doesn’t know what to do,” Neall offered.

The simplicity of VSED helps discourage patients from attempting illegal, and more dangerous, efforts that quicken death, Klugman added. “When chosen with a support system in place, VSED can be a responsible, rational, compassionate, and painless way to take control of one’s end of life that does not involve extreme measures, like guns or poisons, or run the risk of implicating someone else in an illegal activity.”